The National Screening Committee is holding a consultation around their decision not to screen for ALD in the UK, which closes on January 5th 2021.

Alex TLC are planning a coordinated response and mass action to this consultation and we need YOUR help to do this.

We know that newborn screening can’t help those living with ALD and AMN today, but we also know that you will be as passionate as we are that future families don’t have to repeat the heartache and devastation many of us have endured.


What can you do?

1. Respond to the consultation!

We plan to flood the National Screening Committee with new evidence and stories from as many people affected by ALD and AMN as possible. We have prepared a template document for you to use which is available below.

We have already filled in some of this for you and provided guidance for the stories needed for the different sections. All you have to do is delete our text (in italics) and insert your own.

You can either complete and submit the document yourself, or you can send us your story and we will submit it for you. If you have any difficulty with this then please do contact us and we will be happy to help, from writing your submission on your behalf or explaining further what we need.

The email address for where to send the link is on the form and the link to the consultation and full details of all documents involved is here.

2. Share your consultation response with us.

We can then add a short summary of your story to our own response and make our case even stronger!

3. Sign and share the petition!

If we can get to 10,000 signatures the government will respond, BUT, if we can get to 100,000 signatures ALD newborn screening will get debated in Parliament!

Please sign and share this link as much as you can:


4. Help us get the publicity we need to make this an issue that can no longer be ignored!

Do you know a journalist, have any media contacts? We need help to get as many people as possible talking about this across the news, newspapers, online blogs, anything at all, let us know.

Please return your completed form to the Evidence Team at and make sure you cc by Tuesday 5 January 2021

Alex - The Leukodystrophy Charity